A news story out of Pennsylvania is making waves across the nation as it has a couple claiming their mentally disabled daughter was denied a kidney transplant specifically because of her disability. They are claiming discrimination.
According to an AP report:
The girl’s mother, Chrissy Rivera, last week posted a blog entry that described an encounter she claimed happened at The Children’s Hospital of Philadelphia. She said she was there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities.
Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition.
“I put my hand up. `Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?’” she wrote. “I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”
The hospital in question says that is not the case and does not make transplant decisions based on disabilities,whether mental or physical.
Children’s Hospital said in a statement that it “does not disqualify potential transplant candidates on the basis of intellectual abilities.”
“We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities,” it said, adding that it is “deeply committed” to providing the best possible medical care for all children, including those with disabilities.
Experts told AP that there are only so many organs for transplant for children and that any decision was likely based on availability rather than the status of the patient. Still, the denial of treatment is something parents of disabled children have confronted in the past.
In November 2009, parents in Britain battled at the nation’s high court in the case of Baby RB, a disabled boy whose father opposed attempts by a hospital trust to deny him life-sustaining treatment. The hospital trust argues that Baby RB’s quality of life is so low due to congenital myasthenic syndrome (CMS) that it is not in his best interests to stay alive.
More recently, Baby Joseph Maraachli was the focus of an international battle. His parents had to stage an international battle with a Canadian hospital to have a tracheotomy to help him breathe as he suffered from a rare medical condition that would eventually take his life. He eventually passed away in September.